Replies to This Discussion

Permalink Reply by BaldGirlsDoLunch.org on March 30, 2010 at 5:49pm

Hi and welcome,
A new diagnosis is a bumpy road for parents, but most new cases of AA resolve on their own and don't progress.
That said, there is no harm in using the kind of topical steroids that can jumpstart regrowth in anyone, including children. However, the treatment cannot prevent new areas from losing hair. Topical steroids work to reduce local inflammation, and AA is an inflammatory condition at the hair follicle.

Other treatments are unproven. They may appear to work if someone had a condition that was going to get better on its own anyway. There is no evidence that any so-called natural elements you hear about do any good;though you will hear many people swear by them....especially the people who pop onto this site with regularity and pretend to be "interested family" or "patients" when they are clearly product shills.

Doctors, too, may prescribe a bunch of things for parents to do just to help the parents feel like they are "doing something" while the real remedy is time or waiting for corticosteroid to have an effect.

The antidote to teasing is being 100% open and just saying if you need to, "my son has alopecia areata. Here's a website to learn more, ( ChildrensalopeciaProject.org) He's not sick, nor contagious and it's not a big deal.

Watching and waiting is difficult, but take heart that most cases do respond with time. It might seem from AW that most cases are severe, but that's because people with transient AA are not participating on websites like these as much.

Thea
join our list at baldgirlsdolunch.org

Permalink Reply by Rhonda in Texas on March 30, 2010 at 5:57pm

Hi there~

My daughter (now 6) developed AA last summer. She had one very small patch on the top of her head for many many months and it was barely noticeable. It wasn't until I saw a similar patch that I went to my pediatrician and found out what she had. After the second patch formed, she rapidly about half the hair on top and one side. We were blessed to have one of the top AA specialists in Dallas who saw us within weeks. We started her on topical steroid creams as well as Rogaine (full strength for men) We also went to an organic diet, acupressure and night time hypnotherapy. As you can see, I was willing to try it all. She started school at the peak of her hair loss and we met with the lower school and counselor. They sent letters home to the parents and also had my daughter meet with each kindergarten class to talk about her AA, read a book (which I highly recommend) and also had her featured on the morning TV show on her school. We also had our family and friends praying for us. Then, as fast as it came, it left and we are in full remission and her hair is about three inches long on top. It was on year ago April that I first noticed the first patch.

I have a friend who lost a patch as a girl and it never grew back, going on 30+ years now. I also have a friend who struggles with AA off and on all her adolescence and now has Alopecia Totalis. The only sure thing you will hear about AA is that it is extremely unpredictable. It is so hard to hear that because you just want to fix it and make it go away.
I know, I've been there.

I would love to share the book with you that we read. It would even be good for a 4 1/2 year old. Send me an email if you would like email more to each other. I found that talking about it and journaling (blogging) really helped me.

~rhonda

Permalink Reply by Elizabeth on March 31, 2010 at 12:22am

Rhonda, thanks so much for your comments. I love the book idea -- what is the title? I would definitely be interested in swapping email addresses...I'll try to message my address to you - if I can figure out how to do that on this site. I'm still learning my way around.

Permalink Reply by Mandy ( Bradyn's Mom) on March 30, 2010 at 6:07pm

We chose to use Olux ( clobetasol) foam as our primary treatment. Its what childrens recommended. My dd has great results from it and we only use it during a flare up.

Permalink Reply by Cindy (Duncan's Mom) on March 30, 2010 at 10:54pm

Elizabeth, My little guy is 5 1/2. He has had AU since 18 months old. God blessed him with a great personality and lots of confidence. He has been fine. School has been great this year -- I think it was harder on us than him. I know the emotions that you are feeling. It is scary, overwhelming and frustrating.

I want to share with you a eye-opening moment for me when Duncan first got the diagnosis. I was in an airport and saw this beautiful toddler boy -- about Duncan's age at the time. He had big brown eyes with long, thick eyelashes and his hair was thick and wavy. I felt so envious and thought "why can't my baby be normal like that?" Well, the little guy sat down and his pants leg came up -- he had an artificial limb! God so used this to speak to me! Duncan is beautiful and healthy with a great personality! I am blessed to have him and I learn so much from him with his positive attitude.

I still want everything to go smooth for him, but you know nothing in life is smooth and every single one of us doesn't like something about ourselves. We have to learn to overcome and I pray that God gives Duncan the strength to not only overcome, but to be something amazing!

I will be praying for you!


Cindy

ps -- I am actually going to try the Gluten-free diet as well -- I was so glad to learn about it on this discussion board!

Permalink Reply by Gretchen on March 31, 2010 at 3:19pm

Hi all--

I don't have a ton of experience either. It seems like every day is a new experience with this! My daughter Aidan is 9. She had one experience with AA when she was 7. Last fall when all her hair had finally grown back in it suddenly started falling out in big gobs. She is currently totally bald. We did give topical steroids a try the first time around. After a long time using them, she got a little hair regrowth but she got really annoyed with putting the stuff on her head. As soon as we quit the new hair fell out, and like Thea said, it doesn't prevent new patches. This time, she didn't even want to try the steroids. We tried the essential oils for a little while, but it made her head itchy, so we stopped that too.
For me, it was actually a lot harder watching her hair come out and seeing the look on her face as she pulled wads of her own hair out of the comb. Now that its all gone, she's coping pretty well. We've been really lucky in that so far, no one has teased her or been mean to her. Most kids are kids she sees regularly (at school, swimming etc), and they've just gotten used to her. I imagine it'll get a lot more challenging as summer rolls around. She wears fleece hats most of the time and we just got her some cotton ones for summer. Sometimes she just goes bald. She's adamantly opposed to a wig. I got an idea from another mom here (can't remember who) to make her a T-shirt that says "God only made a few perfect heads. The rest he gave hair." She LOVES the idea, and the idea of creating the design for it. We have tried to go the 100% open route with other people, as Thea suggested. It seems like the more comfortable and open you are, the better other people handle it. I sure don't expect it to always be like that though. I've tried to read a lot here to prepare myself and my daughter for different possible situations. I feel like I have a little more control just by being prepared.
There is SO much useful info in this forum and also on the CAP website. And there's a lot of emotional support for when things get rough. I take a lot of comfort in knowing there's a strong support network out there.

Wow, Cindy what a GREAT story about Duncan--thanks! For me a huge part of dealing with this is in how you frame it. Thanks!

Permalink Reply by Elizabeth on March 31, 2010 at 7:52pm

Thanks to everyone for the responses. It's so great to "meet" people who know what we're going through. We sat down with Max tonight to explain to him a little more about his condition. He doesn't seem bothered too much by it. He did say "But I don't want to lose my hair!" I'm curious how you all initially broke the news to your child??

Permalink Reply by Mandy ( Bradyn's Mom) on March 31, 2010 at 9:55pm

Well bradyn has ophiasis pattern so I didnt really "Break" it to her. By the time she was diagnosed, it was already gone. She knows that she can lose it again but doesnt seem bothered by it. She loves to show off her new growth though.

Permalink Reply by Elizabeth on March 31, 2010 at 10:29pm

Mandy, did I see a post from you on another thread that you're near Pittsburgh?? We are about an hour and a half north of PGH!! Max's dermatologist is through Children's...the office is in Wexford? Is this where you went??

Permalink Reply by Elizabeth on April 5, 2010 at 1:26pm

Our appointment with the dermatologist went pretty much as expected. We were prescribed triamcinolone acetonide cream. (I notice it's also a cream commonly used to treat eczema. Hmmm...) I guess we just wait and see?

The doctor was confident our son's case is AA...not Totalis or Universalis. But I can't get past the fact that he is losing so much hair rapidly. The patches are larger and connecting and the remaining hair is thinning, but the doctor said that if it were AT, he would be losing in "clumps" and the clumps would probably have started coming out from the onset (we first noticed his spots (2) at the beginning of March). I guess I'm just curious...and and over-worried mom.

He also took a blood test to rule out any thyroid issues. He's a little guy...shorter than most of the kids in his class and at nearly 5 (birthday is beginning of June), he still only weighs 36 lbs!! So, until I hear the results of THAT test, I'll be worrying about that, too! LOL!

He's still got a load of confidence, though. Case in point: After a segment on the news last night, Max turned to me and said "That guy looked weird." I explained to him how people can look different and asked him how he would feel if someone said he looked weird. His response: "But Mommy. Mommy. You don't understand. I am AWESOME."

Apparently a future discussion about self-confidence is not necessary.